Posts: 21

Topic: Clean Scan!!

Hi All,

I just wanted to tell everyone that after my diagnosis of extrahepatic CC in November, a Whipple on December 15th, 2009, (where they removed the cancer and had clean margins and no lymph node involvement)and 6 months of adjuvant chemotherapy I had my first full CT scan and it showed no signs of cancer! I will see the doctor in 3 months, have blood tests, and another CT scan at 6months or a year depending.

This discussion board has meant a lot to me. Reading about the success of others (I try to read mostly positive stuff) has been inspiring to me.

Re: Clean Scan!!

Hi Randi,

What great news indeed! Time to celebrate!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Clean Scan!!

Randi,

Terrific news! May u have many,many more clean Ct scans. I was diagnosed with intrahepatic CC in Oct 09 had surgery Jan 10 then 6 months adjuvant chemo. Last Ct scan in July was clean no sign of active disease as my surgeon put it. I will have my next scan in Oct my surgeon wants scans every 3 months for the first year. Best of luck to you and everyone who is battling this disease u are all in my thoughts and prayers daily.

Re: Clean Scan!!

Nancy,

Sounds like we are a similar path. The doc wants to hold off on CT scans for me because I've already had 4 this year and he is worried about radiation exposure. I'll see him ever 3 months and blood work then too (but my markers were never high). He did say that usually the only way they would know if it came back was on scan, but given my circumstances he feels like waiting 6 months is not a bad option.

how are you recovering from chemo? I seem to get stronger each day and my intestinal problems have gone away. I had a lot of intestinal issues with chemo where it just shut them down, especially the last cycle or 2.

Glad to hear you are doing so well. I will keep you in my thoughts as well. This disease sucks and I feel lucky to have been diagnosed so early, but then can anyone who has gone thru what we have be called lucky

Re: Clean Scan!!

RandiIt certanily does seem that we r on the same path my tumor markers were never abnormal either! I just finished chemo on the 18th of August I tolerated it very well no problems really just a couple of hot flashes ut oh giving away my age. I was given 5 different chemo meds over a 2 day period I would go home with a pump on Mondays and it would be unhooked on Tuesday when I had my Oxaliplatin. Mondays I was given 3 differents meds. I have a double port so all meds went through there it is better then the veins. I will be seeing my oncologist once a month for the first three months then Ct scan with my surgeon if all is well I will not have to see either of them for 3 months which will be a blessing. I don't know about u but I'm tired of being stuck for blood every week. Is your surgeon still active in your care? I really need to just sit back and take in all that has happened within the last 10 months but, for right know I'm just loving life.Take care:Nancy

Re: Clean Scan!!

They were able to get clean margins and I had no lymph node involvement in the Whipple surgery (stage 2a) so chemo was adjuvant and totally my call to do or not do. I figured I might regret not doing it and I was told that Gemzar was well tolerated. I did 1x a week for 3 weeks and then 1 week off for 6 months. Just finished July 16th.

I didn't get a port until half way thru when my veins were going away. I can only get pricks and pressures on my right side (I had breast cancer and had lymph nodes removed from my left side). I am getting the port out on Sept 22nd and I can't wait! WIsh I had gotten the port sooner tho, cause my veins are pretty beat and NO I will not miss weekly blood draws!!

I see my surgeon for follow ups and he is the one who put in and will remove my port. My oncologist is the person following me mostly, however, I still stay in touch with a very caring GI doctor that first diagnosed me and my internist is wonderful as well.

I know what you mean about processing what has happened for the past 10 months, it's a very ugly blur right now. Never thought I would be done with it and hopefully we are both done with it!

I went on a cruise 3 weeks after chemo was done with my family and extended family and it was the best decision I made throughout my treatment. It was relaxing and detaching and the only time I thought about CC was when I undressed and saw my scar (which is actually fading quite nicely) and my port.

I am also loving life. This is my third separate cancer (breast, thyroid, and CC) and I have had enough thank you.

If you are on facebook, go ahead and "friend me"... it's Randi Barrell (I am the only one)

Re: Clean Scan!!

Hi Randi,I read with great interest your posts because you seem to be about 2 weeks ahead of me in diagnosis and surgery. My surgery for extrahepatic CC was at Mayo Clinic in MN on Jan. 5, 2010. My margins and lymph nodes were clear and my surgeon said it was not necessary to refer me to an oncologist - and now I'm kind regretting this decision. I have had 2 CT scans since the surgery (July and Oct. - when I had some sharp pains) and neither showed any sign of recurrence. At the advice of Lainy and others on this board I saw an oncologist a couple weeks ago who said he would have talked to me about adjuvant therapy in Jan., but would have let me decide if I wanted it or not. At this time it is not recommended. SOOOOOO....I go back to see my surgeon (who is the main doctor following my care) at Mayo in Jan. and am hoping for continued good news! For the first 8 months or so I think I was kind of in shock and really busy planning my daughter's wedding so didn't get too down about it all, but lately I've had some down days. I think the cruise with family is a GREAT idea!

Nancy: My husband and I were just in Wanaque, NJ for a reception for our daughter's wedding. Lovely area!

Re: Clean Scan!!

Diane-Wishing u only the best of news when u have your f/u CT scan. It is a day to day mental struggle with CC. Some days I don't think about it at all and then as u said there r other days when it is the only thing u can think of! So good u were busy planning your daughters wedding after surgery always a happy and blessed event. I was diagnosed just 5 days before my son got married. I'm the yellow one in the wedding pics. lol Yes-NJ gets a bad rap and is the butt of alot of jokes but, I've been a Jersey Girl for all my 52 years and don't plan on leaving anytime soon. It really is a beautiful state we have it all! Continued good health to u and as always my thoughts and prayers r with all on this site Nancy

Re: Clean Scan!!

I am heading back to the oncologist for my 3 month follow up on Tuesday (Nov. 23). I have to say I am a little nervous. They are not going to do a scan this time, but I believe I will have a blood test. My markers have never high, so this will just be for liver function I suppose and miscellaneous stuff.

Dianne: Don't second guess too much about not having had chemo. It was totally up to me whether I had it or not and I opted out of radiation (a decision which my doctors supported). Your doctors (especially your surgeon) know your specific situation and the Mayo is an awesome place with skilled medical staff...you were/are in good hands.

Like many on here, I have good days and bad emotionally. I think one thing I've learned along the way is that life is so unpredictable and fragile and we shouldn't take it for granted (altho I am sure at times I do). I often wonder if I need to learn this lesson over and over again!! I think as checkup appointments approach I get more nervous and focus in on little aches and pains too much. I started weight training again and was sore and it freaked me out a bit.

Lainy: I read your positive and up lifting posts on here occasionally and YOU are an inspiration!

Thanx for all the kind words everyone. I'll check back here after my followup appointment on Tuesday.

Re: Clean Scan!!

Randi - Just know everything is going to be fine with your lab work! I totally understand the anxiety about this. I have told my family many times being off of chemo is like a double edged sword I'm so thankful I don't have to have chemo anymore but, at the same time I'm wondering what's going on in there? Agreed never second guess any of your decisions and as far as Lainy and everyone else on this website go all are inspirations. so much strength and hope on this site. I know u will be chiming in with more good news soon. Nancy

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.